Fuck psoriasis and eczema!

[Wintermarshmallow]

honestly, I’m fed up of it. Seriously- fuck psoriasis.

my scalp is covered in scales, plaques and thick chunks of skin. I can’t have my hair up because it’s so obvious. I’ve actually just woken up because I must have rolled on my pillow and my skin has all cracked open and my pillow is covered in blood now. A massive crust (easily 1 inch by 2 inches) has just come off my head and I actually feel like I’m shedding a whole new scalp.

im so fed up of it all. It’s embarrassing, painful, and an absolute dick to live with. I’ve grouped it with eczema in my title as that sounds horrendous to deal with aswell.

i’ve had almost every form of steroid available for it and no real improvement. I’ve tried every shampoo and am fed up with people in real life trying to be helpful by suggesting t gel, or asking if I’ve ever heard of a coal tar shampoo- no, that one must have passed me and my dermatologist by🙄 I know I sound grumpy and people are only trying to help and don’t mean to be patronising, but it’s so frustrating having people comment on it at all never mind suggesting things as if it will fix it straight away. It’s also really frustrating hearing people casually describe little bits of dry skin as eczema or psoriasis, i know in some people it can be mild dry skin but generally it’s not and I feel like some people don’t understand just how awful it can be 😢

arghh, I’m just so fed up of it all! Just needed a good rant and to get this all off my chest.

anyone else fed up with their shitty skin?!

Have you tried bathing in oats? My neighbour's daughter's friend cured hers by doing that.

I'm kidding.

The only thing that really made a difference for me was UVB light therapy. 90% clear and it stayed away for about 6 months before slowly coming back (in different places). I'm waiting to go for it again. Seriously tempted to shave my head beforehand so I can get my scalp treated. Other than that, cutting out carbs helped take the itch and redness out of it, but that obviously doesn't help the extent of it.

Yes!!

Scalp psoriasis is sort of under control - I rotate between Sebco, emollient and steroids left on overnight, 3 x a week.

But I've got a really stubborn patch in my eyebrow and at the top of my arm!! And eyebrow specific advice??

I have had psoriasis, not on my head though. I had a sort of UV therapy, 3 times a week for about 6 weeks at my local hospital. It really did the trick. It isn't a cure, apparently, there isn't one. I don't know if it will work for your case but it might be worth asking.

What worked for me was vitamin D and coconut oil slathered on the cuts and dry skin and it cleared it up in 4-5 days.

The greasy haired look was worth it to clear it up.

I have it just as you described OP. It is horrendous isn't it?

My scalp is shocking and it has spread down my forehead to just above my eyebrow.

My GP told me yesterday to use Coconut oil on my head for 25 mins, then wash it with the prescribed shampoo. Then to apply the creams.

I have had it for years, but it has ramped up recently due to the stress of a house renovation and a family bereavement.

Aww OP I feel for you. I had psoriasis so bad. I've actually managed to get a massive grip on it over the last decade.
Not sure you want to hear and it have read the full thread but:

I cut out dairy

Take daily vitamins and probiotics

Cut out bread and anything with yeast in
Massively look after my mh anything that stresses me out I stop. If work stresses me out I try to re jig everything the minute I start to feel unwell. A particularly stressful event I simply do more hours so I'm not doing anything intensively (I don't get paid and it's not nice but worth it to prevent health problems)

I use soap (and only bland sensitive skin soap) only on my arm pits. Everything else is water because it just affects my skin too much and I'd do away with my arm pit wash if I didn't risk smelling!

For hair I use Phillip Kingsley anti itchy shampoo. I have tried every single shampoo for 'dandruff' (I know it's not dandruff) but this stuff actually works on my scalp. It's not 100% gone but I am no longer a walking snow globe. My scalp has massively reduced the scabs on it too and no bleeding just the occasional scab.
Expensive but I use it sparingly in the areas that consistently scalp and it works!

Also I don't blow dry my scalp with a hot hairdryer. I know it's rubbish but I use cool or none.

Haven't read full thread*

Sun cures me too, but sadly I can't move to the Bahamas ☹️

Currently it's about half of my scalp (one thing that does help my scalp is peroxide, but my hair isn't too fond of it!), both ear canals, small patches all over both legs and inverse in my groin (this one is the worst as it splits and bleeds).

I also have psa and I'm currently switching biologics. Just started a course of pred too, to tide me over til my new bDMARD kicks in.

My face also flares terrible once the weather goes cold, all around my mouth. Atm it's only about 1cm, but it will inevitably spread as the weather turns

PS I eat keto - it does help but it doesn't cure it unfortunately

I also take high dose vit d, vit b12, and cod liver oil.

Ah I recognise these feelings. Have had psoriasis since age 14 (now 39) and mine has been ok to bad to awful to nothing over the years. I'm going through probably my worse time with it at the moment.

I have to say I have no advice I'm afraid, I have found the only thing that helps is the sun. Mine went completely when abroad for 7 weeks in the summer, then after a week back in the UK it was back.

Interestingly I've found since undertaking ivf a few years who generally mine has been a lot worse.

Like a lot of people I've reached a point where I've given up and have just got used to it. Is anyone else worried about what's going on inside their body too?

YANBU OP. The only thing that got rid of mine was pregnancy. Although enstilar helped a lot with the scalp which is probably my worst bit although it looks like you've washed your hair with Vaseline when you use it. It's in my ears too then I get ear infections

I feel for you @Wintermarshmallow my dad suffered terribly with psoriasis

I too have terrible skin:

I have pompholyx eczema on my hands and feet, which I'm pretty sure is triggered by chemicals in soaps and stuff

I have a condition called hidradenitis suppurativa (google at your peril, I'm have stage 2) on my inner thighs and buttocks which I take long term anti-biotics for - they keep it somewhat under control

I have Necrobiosis Lipoidica on my left shin, which is "dormant" at the moment....

And I also have severe Keratosis Pilaris over most of my body, and although it isn't painful or itchy it's so unsightly!!

Have you ever watched Dr Pimple Popper? She prescribes injections for her psoriasis patients (not sure exactly what it is) and it seems to be amazing!! Could you ask your dermatologist if that is something available over here, either via the NHS or privately?

yup. Psoriasis here. People think ‘oh a bit of itchy skin’ but at times it’s agony, it cracks, it burns, my joints ache.

I hate it

It's weird, I'm in my 60's, never remember anyone having these types of skin problems in my teens or twenties. Could it be pollution?

I was taught to cover it up and hide it as it was shameful. People just hid it.

Yes, my dad would have been 74 this year and he had it from being a little boy - his father was very mean to him about it and made his feel like he was a leper

So it isn't a "new" thing and they're unfortunately no closer to finding a cure

Yes I was totally fed up with mine. Have had psoriasis for 35+ years since I was a toddler head-to-to, flares up, calms down, flares up again, tried everything the dermatologist suggested, nothing ever worked that well. Then I took a massive reaction after my first COVID vaccine, couldn't sleep it was so sore, inflamed and bleeding.

I went back to the dermatologist and this time was offered Tremfya (an immunosuppresant injection) and within 4 weeks I was 100% clear and have been now for 8 months. It's not for everyone and has side effects (which luckily I haven't had) but it's always worth getting a referral back to dermatology and asking what's new and what the next step is.

In the meantime if it helps, I used to use Nizoral for my scalp when it was really bad and Balmonds scalp lotion in-between washes, they worked well enough I wasn't shedding scalp flakes everywhere.

Dead sea salt helps soothe my itching.

It's such bullshit; I'm so sorry OP. I've had eczema since I was tiny - loads of patch tests, diet changes etc etc, and still it comes and goes like the f*cking weather. Currently on the comedown from around 2 months of massive bloody scalp flakes, infections, weird circular patches on my arms (nummular eczema? God knows), blepharitis on the eyelids, and on and on. I've been on a regime of antibiotics, and now have Betacap and Nizoral for my scalp, Fuxidin for the eyes, Betnovate on the arms, switching between Oilatum and salts in the bath. It's so shit! It itches and hurts so much, I hate that I can't cover the stuff on my face with make-up because it makes it worse. I hate that I dont' know why it happens - there are a few specific triggers but then sometimes it just comes in out of the blue. I also had an incredibly skin reaction to a Covid booster, like my skin had been set alight from neck to ankles, genuinely felt (and looked) like actual burns.

Super-interesting about the light treatment - I know my skin gets better in hot countries but hadn't twigged that maybe a sunbed (carefully!!!) might help. From here, one of the unexpected things that helps me is when I bleach my roots - I think it acts as a kind of bleach bath for the scalp and, though I have more flakes directly afterwards, it really seems to sort out my skin for bit; you'd probably have to be careful with it though. I haven't tried actual bleach baths for the rest of my body though and would be interested if anyone here has?

I've had psoriasis for about 16 years and am now psoriasis free but it took a lot of work. I came off all steroid creams, as soon as I stopped using them my skin would flare awfully and eventually I realised if I never stopped them I'd never escape it. It wasn't easy and I was covered head to toe for a good while. I know how annoying it can be when people say oh, try this try that, when you've tried literally everything the doctor has offered but if anyone does want to know what I use to keep it at bay I'm happy to help. I have plaque psoriasis on my skin and I also have scalp psoriasis 😊

I've always been tempted to try the bleach baths, but never felt brave enough either! 😁 like you, bleaching my hair does help my scalp, so it makes sense - I just haven't had the lady-balls to do it!

Try cutting Gluten, sugar ( including alcohol) and nightshades out of your diet, it will make it much better & calm it down.
Dairy may be a trigger so you may need to go also.
You will have to see what your triggers are but it's what you are eating that is causing the problem.
If you have Facebook or insta, follow Hanna Sillitoe.com... she was covered in psoriasis and has healed herself.
She's vegan now, but I know ppl who eat meat, veggies & raw dairy, they are ok with their psoriasis too.

It's going to be trial and error until you find what suits you and what doesn't.

My ex neighbor had it and she actually moved abroad to Tenerife a few years ago as the sun was the only thing that got rid of it
I met her in February this year as I was out there on holiday and I wouldn’t have recognized her

she was like a totally different person no itchy skin no scabs no redness - she looked and I guess felt amazing . Her confidence was through the roof - it was like meeting a complete stranger

drastic to move abroad but she’s the only person I know who seems to have got rid of it

.

Bumper daily doses of Vitamin D really helped me.